Endometriosis and Interstitial Cystitis

[LCI1]

Hi,

Does anyone have a diagnosis of endometriosis and interstitial cystitis? What is your experience of this?

What symptoms do you have? How do you manage them?

What treatments have you had?

[Alex9]

I had a great gp who took me seriously and suggested interstitial cystitis after I had complained about frequent going to the loo. I went through stages where I'd be up and down all night for 3 nights in a row and then back to normal for a few weeks. Urine not smelly or stinging/ burning , but i would get spasms in my lower back. He was going to refer me for further tests but i moved out of the area! Gp now is rubbish.

My endo has progressed in the last 5 year's since my son was born and now I get these symptoms every month around ovulation.

I manage the pain with naproxen now.

[LCI1 in reply to Alex9]

What stage Endo do you have? Have you had any surgery/treatment?

[LCI1]

We’re you diagnosed with interstitial cystitis or Endo first.

My interstitial cystitis was diagnosed years ago and I cope with that - I experience urgency, frequency and low capacity and pain if I don’t empty my bladder.

Last week I had a laparoscopy to remove a cyst identified due to fertility difficulties but severe Endo was diagnosed so it was only diagnostic.

Consultant briefly suggested IVF if fertility is main issue rather than pain - Back to see him on 27/1.

Reading up on Endo I can now see I had symptoms but just didn’t know it wasn’t normal severe pain during period, pain when urinating and bowel movements on period, constipation during period, dark blood/ brown spotting at start/end of period.

Trying to figure out what the options next might be before I see consultant so I can think about priorities and options.

Partner has kids so not entitled to NHS IVF.

Do I need further exploration/removal of the severe Endo? Would this increase the chances of conceiving?

Should I push for referral to an BSGE Endo centre?

[Bespp]

Hi, I have endo stage 4 and I am in the process or following up with a specialist to see if I have interstitial cystitis as I have all the symptoms. I have been taking some cranberry pills out of holland and Barret and they have been helping a bit and reducing caffeine helps a lot.

Hope it gets better for you

[LCI1 in reply to Bespp]

What are your Endo symptoms?

How was it found?

What treatment have you had? Are you waiting for?

Have you been referred to a BSGE?

[Bespp]

I live in Northern Ireland where there is no BSGE clinin sadly. I had a lap and was reccomended a hyster but opted not to go with it. Some of the symptons are fatigue, immune system goes down very quickly, abdominal pain, severe period pain, uti symptoms, shoulder pain, sciatica. I probably have about 7 good days a month if I am lucky the rest is horrible. I manage the pains with a good diet, no drinking, no smoking, exercise, yoga, chiropratic and a lot of dog love to keep the sanity in place.

[Gemini201]

Ladies interstitial cystitis does not exist. It is a made up diagnosis by the doctors for a host of symptoms that they cannot explain with testing. The tests for urine infections are 50% accurate at best and a lot of the time UTI’s are missed because of this. The bacteria hide in your bladder cells and cover themselves with a biofilm to protect themselves from antibiotics. Then when you stop the antibiotics they resurface when it’s ‘safe’. You most likely have an embedded bladder infection and long term/sometimes dual antibiotics are required. I was diagnosed with interstitial cystitis and after researching for weeks I discovered the LUTS clinic in London, originally run by Professor Malone-Lee. He treated me for three years on antibiotics and my symptoms are mostly non existent now. Please don’t accept the interstitial cystitis label as its rubbish! You have bacteria in your bladder. Do your research into embedded bladder infections.

[Bespp in reply to Gemini201]

Thank you for the detailed post. The more I read about it the more it makes sense what you described. Keep well

[Ejrn]

I had the most unbearable bladder symptoms in the past year, would end up in A&E every other week in excruciating pain - what felt like a UTI yet when they’d test for it, it would never come back positive. I was in so much fear of the pain I was having and was genuinely one of my lowest points. I had a cystoscopy last summer and they found nothing wrong with me other than some inflammation and nothing in the biopsies. I was told I had IC but been completely unwilling to accept that - that’s not an answer! I have tried so many natural remedies since, dietary changes, meditation, yoga, but the one thing that changed was when I came off the pill. I’m going to put seminal plasma hypersensitivity and you can google it yourselves, but this is another major cause of IC that the doctors rarely ask about or test for. Ever since addressing this I have had no more pain. I had a laparoscopy yesterday and there is no endo near my bladder so this is the only answer. This will not be the case for everyone, and there are many things that can cause it, but like Gemini201 said - there is always a reason, and I also believe IC does not exist, it is a cop out on behalf of doctors.

[Gemini201]

That’s an interesting one-I haven’t heard of that before but I’m intrigued. How did you test and treat it? What were your symptoms? I hate when doctors give IC diagnosis and women are just left in agony. X

[Ejrn in reply to Gemini201]

It is basically an allergy, and I feel women are very rarely told they can even be allergic to their partners! Sorry this is going to have to be too much info, but basically when I stopped taking the pill and started using other methods of contraception, I realised I was no longer irritated and in pain afterwards. I think the swelling in my cervix was disrupting my bladder so severely and causing me such unbearable pain. The symptoms were of a classic uti - weeing every 5/10 minutes, burning afterwards, and irritation in that region constantly. And then it would build to the point were weeing was too excruciating to even bare and I’d end up rushing to hospital. I haven’t been formally tested but it is the only thing that has changed and I have been in no such pain ever since. I always noticed it came up around the time I had sex too. When I told my urologist what I thought, she just said- you’re not the first woman to tell me this and then continued to discharge me. Laughable!

[Gemini201]

It’s madness how these urologists treat people. My urologist told me it was all in my head and because I was stressed about trying for a baby. Ditched that pathetic excuse for a doctor!!